Trail Mix
In celebration of Autism Awareness month, I’m sharing this post not as a therapist, but a mom. No clinical wisdom or recommendations, just recent experiences and empathy for those who can relate. I hope this a reminder to other parents of children with ASD that you are not alone!
I’ve made quite a few healthy, organic-eating type friends over the years, you know the type of people who call broccoli and hummus a snack? No judgment I LOVE veggies on my pizza, but seriously did everyone but me know that Trail Mix WITHOUT M & M’s is a thing? I mean come on where’s the balance in that? Or how about tea without cream and sweetener? I thought occasionally switching to tea from my large heavily caffeinated coffee automatically made me a level 10 master of mindfulness, but apparently I missed the mark! The thing is, my coping skills look a lot like my snacks...I can deal with the bland & salty parts of life, but humor is my sweetener. For that reason, talking about Autism Spectrum Disorder is hard…no joke. In August of last year, my son Jordan was diagnosed with ASD. I wasn’t totally surprised, I knew the signs, and my husband and I had been concerned for a while, but the reality of the diagnosis hit me like a ton of bricks. I felt myself shutting down. I couldn’t deal, not a single M&M in the mix.
What did I do Wrong?
It’s funny how quickly our opinions (mine at least) can change once we’re the ones dealing with a crisis. All of the questions I never would’ve asked or even thought of when facing other parents flooded in full force. The most persistent question among them: What did I do wrong? Over and over again I went through the checklist of the adjustments I made and research I read to prepare for my son’s birth. I racked my brain trying desperately to figure out what step I missed. I couldn’t talk about what was happening in much depth for months because any response upset me. Empathy felt like confirmation that something was wrong with my baby. Optimism felt too Pollyanna and unrealistic. I didn’t want pity, I still don’t. Or worse, some kind of badge of honor like I was suddenly mom of the year. I wasn’t, I’m still not. Point is, it’s hard to comfort someone who isn’t open to receiving and opening up has been a slow process for me. On the other hand, thanks to one too many internet searches, and the gift that is social media, I faced the reality that there are many people who believe that something I did, or allowed doctors to do, caused my son to develop Autism. Something that I fully understand now is that general comments or posts about a group of people, label, or condition (e.g. women, depression, cancer) can feel extremely personal to a member of that group. Every time I see or hear the word Autism, my brain translates it to Jordan’s diagnosis. Sure I learned the importance of person-first language in school (e.g. person with Autism vs. Autistic person) and I practiced it faithfully, but nothing drives a point home like personal experience. Another thing I understand now is that, in those early months, information about Autism was processed through a filter of self-judgment and a burning desire to answer that nagging question: What did I do wrong?
Fortunately, through the support of family, friends, and an amazing network of local therapists and educators, my son has made progress. We’re still early in the game, and our family has hard days, but I’m convinced that this diagnosis is not the end of Jordan’s story. We’re getting through this and not all of it is a struggle. A friend shared a post recently that said something like, “No one celebrates the small things like the parent of a child with special needs.” Truer words never spoken! When Jordan says “mommy” it’s like pitch perfect music to my ears. And speaking of pitch, when he sings, always on key, but sometimes with only one or two clear words per verse, my heart swells with joy and pride. He brings out the best out in my older son who loves nothing more than making him laugh. For my husband and I, he’s re-defined patience and reinforced the importance of slowing down and being present.
I feel encouraged by the research available to families nowadays and I have the utmost respect for the trailblazers who fought for rights like insurance benefits and education so that all of our children could have better lives. I’m also thankful for the parents who have taken time to share their experiences and success stories (even if we differ in opinions and paths). It’s a powerful feeling to realize that we don’t have to go it alone. So in answer to my question that still creeps up now and again, I redirect my energy and remind myself that Jordan isn’t wrong...he is my motivation, he is my laughter, Jordan is my sweetener.
Autism Resources:
https://www.autismspeaks.org/family-services/resource-guide
https://www.ninds.nih.gov/Disorders/All-Disorders/Autism-Spectrum-Disorder-Information-Page
Find an Autism Speaks walk near you:
https://act.autismspeaks.org/site/SPageNavigator/speaks_walk_allevents.html